Editor’s Note: Jenny is the mother of two children with special healthcare needs and a Patient & Family Advisor at her local children’s hospital. In addition to her lived experience, Jenny calls upon her professional experience as a social worker to help her write blogs from her home in Wisconsin. –Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics
When my daughter was born we found out there was something wrong with her spine. As a result, she also had trouble with her bladder and kidneys. Her specialists pushed us toward medication, catheters, and maybe even surgery. However, our doctor warned us that those options may do more harm than good. We felt confused, scared, and pressured to make decisions we did not feel equipped to make.
This month’s Pediatrics shares the story of a family faced with a much more difficult decision. In an article entitled “Beyond the Question: Reexamining a Parent’s Unusual Request” (10.1542/peds.2023-064954), we learn about a baby who was born at just over 23 weeks. Due to his extreme prematurity, he faced many complications but eventually reached a stable place. However, his father still requested a transition to palliative care. The medical team responded “no” right away, but they felt distressed and worried about future conflict.
This scenario presents an ethical dilemma with no easy answer. Deciding “right” or “wrong” too quickly can prevent medical teams from providing the best possible care for families.
In order to understand the full context of the situation, this Ethics Rounds takes a closer look at the father’s request through the lens of a neonatologist, a clinical ethicist, and a conflict mediator.
What are some tools to use when faced with difficult ethical questions?
The authors introduce the following tools in their discussion of the case:
The Ladder of Inference
When making healthcare decisions, families may not have all the information they need. Their views may also be shaped by past experiences, defined roles, and level of trust in the team. Providers can help families navigate these situations by helping to fill in any missing “rungs” in their understanding.
View from Everywhere
Maintaining a view from everywhere means identifying all of the key stakeholders (including the family) and naming the priorities and perspectives of each person. Sometimes working through an ethical decision can feel like putting together a puzzle; you need all of the pieces to do this effectively.
Positions versus Interests
A family’s position on a decision refers to what they think should happen. A family’s interests refer to why they feel the way they do. When making difficult ethical decisions with a family it is important to recognize the values, desires, worries, and motivations that inform their position.
Trauma-Informed Ethics Consultation
Many families have already been through a tremendous amount of stress, shock, and suffering. Instead of assuming something is wrong with the family, providers can ask what happened to the family. Using trauma-informed care encourages curiosity and compassion before drawing conclusions.
What are some other best practices shared in the article?
The authors suggest these best practices for working through ethical dilemmas with families:
- Push pause—Hard decisions cannot be rushed. Instead, slow down and breathe.
- Take a step back—Create space to reflect on feelings of surprise and distress that may arise.
- Explore the context—Questions from families are often more complex than they seem.
- Engage empathy—Remember that families may feel confused, scared, and overwhelmed.
- Recognize biases—This is especially important when working with marginalized groups.
What can you do with this article?
- Share this article with your healthcare providers. This case study offers a great model for working through difficult ethical decisions with families who may have a different perspective.
- If you are currently working through a hard decision for your child, consider the tools and practices shared in this article. Even if you do not fully understand the clinical aspects of your child’s care, your perspective, questions, and concerns matter. It is okay to speak up!
- If you are part of the advisory board at your hospital, advocate that medical teams have access to trainings such as conflict management, implicit bias, and trauma-informed care.
